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Topic: New member -- Wife recently diagnosed with ICC

My name is Jason, and my wife Andrea was diagnosed with intrahepatic CC on April 1. It is amazing how much our lives have changed. I think we are both still in shock and somewhat in denial...

Andrea is 45, very healthy and has no symptoms at all. That is the good news. The bad news is that she had a routine blood test back in November 2012, that turned up some slightly elevated liver test numbers. After a number of tests and retests, we finally had a CT scan that showed a liver lesion and then a biopsy that indicated upper GI adenocarcinoma. That was the news that arrived April 1.

Since then, we have had a PET scan that indicated it was very advanced in the liver (multiple tumors with the largest 8.5 cm), but had not spread beyond the liver. Andrea is getting treatment at Stanford, and she has started on gem/cis (2 weeks on / one week off), and has now completed the chemo for two cycles.

I have tried to research as many options as possible, but Andrea is not a good candidate for most. Here is what I have pursued so far:

Resection -- not a candidate given the central location of the tumor and the involvement of both lobes.

Proton beam therapy -- This looked promising, and I contacted Dr. Ferrone at Mass General, but Andrea is not a good candidate because the number and aggregate size of tumors is too large.

Transplant Mayo -- Mayo clinic has a transplant protocol, but after talking to the researchers there, I understand their protocol is only for hilar CC. (Dr. Heimbach was very kind with her time here btw)

Transplant UCLA -- Actually, UCLA is one of the few places that will consider transplants for ICC. Again, the extent and the potential involvement of a vein meant she was not a candidate at this time.

Radioembolization -- We finally hit a procedure that seems to help people with Andrea's cancer profile. Both the fact that she is healthy without symptoms and that her tumors are more peripheral instead of infiltrative seem to be characteristics associated with good outcomes.

Our current plan is to see how chemo is working and then probably do the radiation at some point. I understand that surgical removal is the only current cure, so I just hope somehow some of the therapy can facilitate surgery...

We have two wonderful boys (age 14 and 12), who would be devastated to lose their mom. Too terrible to even think about that.

Anyway, I am very thankful to have found this site. After spending a few days here, I can tell there are many knowledgeable and caring people. I have a number of questions, and hopefully I can benefit from your experience. This disease sometimes seems so very dark, it is hard to even get your mind around it.

Re: New member -- Wife recently diagnosed with ICC

JScott,My name is Sam and was raised in Los Altos. Sorry to hear about your wife and will keep her in my prayers. My wife also has CC since February 14th. She has been on Gem/cisplatin on the two weeks on and one week off since then. (She just missed one series because her white counts were too low. The Cisplatin is tough on her tumor but hard on her too.) Her tumor was Football size and has shrunk to half that size. Another person we have met during this journey, Kevin, just had a resection of his tumor that started out grapefruit size and shrunk with the Cis/Gem regiment. He started on 11/11/11. Both were told that the tumor was too big to operate on but his shrunk small enough to have surgery and that is what I am hoping for my wife. It seems like shrinkage is the best word you will find on this site and hopefully your wife's tumors will shrink to the point that she is a resection candidate. You are both in for a rocky road but there is hope and keep on keepin on!

Re: New member -- Wife recently diagnosed with ICC

Dear Jason, welcome to our extraordinary family but sorry you had to join us. Andrea certainly has a wonderful advocate in you! She is at one of the best Hospitals and you have researched a lot of the best Hospitals for different treatments. This CC is the sneakiest Cancer, almost like it has a mind of it's own. We do have quite a few Members who have gone on to surgery after having their Chemo treatments. There IS HOPE! Ask all the questions you want, we are not ONCs but we sure have experience and will do our best to help. You have already done a ton of research and knowledge is our most power toll in fighting this CC. Along with that attitude is a biggie and most of all BE STRONG! We look forward to hearing more about Andrea and please keep us posted as we truly care. I know you are going to be hearing from a lot of our Genuis and caring Family.

Re: New member -- Wife recently diagnosed with ICC

Jason.....I too would like to welcome you. Your extensive research on treatment options is quite remarkable. Please now that it sets an example to many others presently and in the time to come. As you have noted, liver transplantation historically have been conducted on extrahepatic disease however; there are some institutions considering intrahepatic cholangiocarcinoma. I don't know anything about it other than that our Tiffany is on the transplant list and in fact, as we speak is awaiting a donor liver. Personally, I prefer to compare this to a chronic disease. Research has increased, numerous clinical trials are underway and several are in the concept stage. So, we try to stay positive and continue to be vigilant about anything coming our way. Although, this disease affects thousands of people globally, it is the individual that sets his/her own responses to treatment.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member -- Wife recently diagnosed with ICC

Jason,

So sorry you've had to join this family off patients/caregivers dealing with CC. (my husband was dx april 9 2012 and had a resection, and is doing well at the moment, but i'm always aware of the possibility that the CC could return, especially since it metastasized to a distant lymph node and there is/was perineural invasion.)

Anyway--even though you live on the west coast, you may want to run your situation by Dr. Tomoaki Kato ((212) 305-5101) since he performs surgeries that no others would dare. Another great doc, at Sloan, is Dr. Fong. Of the two, I'd say that Kato is more "outside the box" and you may just want to see what he has to say about your wife's case.

Re: New member -- Wife recently diagnosed with ICC

Hi,PET/CT scan may not be the best scan information for the surgeons to render their decision. Therefore if you are on PPO insurance that you can ask your oncologist or even you GP to order a CT scan of the chest, abdomen and pelvis WITH contrast for your wife , and then like Audrey said, send the CT scan DISC and report along with the labs to Dr. Kato to take a note . It won't hurt but you may gain more if he will explain to you why not or he may just take your wife in for surgery. BTW, Stanford is famous in their interventional radiation department, but then again, you have to weight the benefit against the adverse reaction of the radioembo. procedure; read more about the procedure, get a second opinion from Dr.Kato first, then to decide to continue the chemotherapy of GEM/CIS for a period of time, and allow enough time to let the body to recover from the chemotherapy before starting radioembo . That will be my suggestion if I were in your situation, and please remember I am ,like your wife is a patient, and nothing else.God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member -- Wife recently diagnosed with ICC

Greetings to you and so sorry you had to find us but, wow, this is the place to be! My case is almost exactly like your wife's only I'm 55 with a 15 year old daughter. One main tumor, many small tumors. I did four rounds of gem/cis and had surgery to remove the big tumor and the whole left lobe, knowing that the surgery could not be curative because the right lobe had small tumors too. My surgeon was Dr. Kato. The key is that the cancer may have spread through the liver, but had not spread anywhere else or to any lymph nodes. After surgery I had y-90 and have not yet gone back to chemo, which will be next. Keep us posted on your wife, and ask any questions. Best to you all. ~Holly

Re: New member -- Wife recently diagnosed with ICC

Jason, I am a 48 year old mother of two boys and wife to David. I was diagnosed with ICC in 2010. I have had two liver resections, many different chemos and steriotactic radiation. I know others have mentioned Tiffany and she has ICC and is awaiting a liver transplant, she works with Dr. Javle at MD Anderson. I have read several stories on this site where tumors have shrunk and surgery became available. If you would like to talk to someone please feel free to call me at 330-903-6868. Lisa Craine

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: New member -- Wife recently diagnosed with ICC

Wow. Thank you all for the kind words and encouragement. It has extra meaning coming from people that know first hand what we are going through.

Andrea and I have kind of taken a divide and conquer approach. She is focused on the therapy in front of her, and my job is research. The hope is that I can be knowledgeable about treatment options and tradeoffs so we can move quickly as things develop.

One of my worst fears is making a bad call on what to do. The only way I have found to push back this fear is to do everything I can to learn about this disease and treatment options. I may still choose the wrong approach, but at least I will have done my best.

What is pretty amazing (and just shows the power of this group) is that in the course of 24 hours, so many new options have popped up on this thread!

Sam -- Football size and shrunk in half in two cycles? That is amazing. I hope things continue to go well with your wife. Fingers crossed that Andrea has a similar positive response.

Audrey -- Thank you for bringing up dr. Kato. He seems like someone I definitely need to try and get to review Andrea's information.

PCL1029 -- Interesting. We only got a "lower abdumen" CT scan, but that was before the cancer diagnosis. I am not sure if it was "with contrast" or not. I should go back and check. Any thoughts on what extra information this type of scan might show? If I understood that better, it would help advocating for that scan with the oncologist.

The current plan is to get a scan after 1 or 2 more gem/cis cycles. It seems like that is a good time to reach out to Dr. Kato for another opinion (as well as circulate the scans with the docs I have seen already to see if their opinion has changed). Any thoughts on this plan? Should I push for a scan ASAP?

Holly! you got a resection even without getting all the cancer?? That may be a good option for Andrea. Lots of things are not possible given the extent of the cancer. Cutting most of it out and dealing with the rest seems like a sensible idea, but no one I talked to seemed to think that was a possibility. Thank you for commenting! It seems high risk but also high reward. My head is spinning.

Was the plan all along to do y-90 after the resection, and was there a reason that was thought to be a good plan?

Lisa -- Your situation seems very similar to Andrea's. It sounds like you are doing well with your treatments. I do hope so. Hearing success stories is very encouraging. Thank you also for the kind offer to talk.

Re: New member -- Wife recently diagnosed with ICC

If I were you, I will get the CT Scan with the contrast done, then send the disc an lab to Dr. Kato for surgical consult First, dr, Shelby in USC will be ok too, but I still suggest Dr. Kato. first. And see what you can get from him. I will get it done ASAP. It will take time to schedule your Ct with contrast,it take a couple day to allow radiologist to read and dictate the report. And it will take time to gather all the info of your old Pet!lab from medical record dept. by the all thing are on dr Kato desk, 2 weeks -3 weeks may be bedded.Therefore ,if I were you , I will plan it right away .and FIRST for DR. KATOWICE.HAVE TO GO NOW,SORRY.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member -- Wife recently diagnosed with ICC

Jason-Welcome and sorry you had to find us. I am a CC survivor thanks to a liver transplant. I will be 4 years cancer free on Friday!! I have an amazing story to share and keep it posted at www.catherinedunnagan.com under the telegraph link. There is HOPE.My miracle who saved my life twice is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman help develop the Mayo protocol and is the most kind, loving doctor. The one reason I am metionning his name is because last year I was honored to be invited to a lecture/ reception for him and what he talked about was getting more ICC patients into the transplant program and how they were making great strides and including some. I could fill books about this man and his heart. We have a gentleman who lives in Hawaii and flew his wife all over for treatment and believes if he had found Dr. Chapman sooner she would still be here. Dr. Chapman also is very phone friendly. We just had a young women have her life saved by a doctor who did his fellowship under Dr. Chapman and he calls him his HERO!! One of the miracles of my story is I grew up in California (Sunnyvale) and was very whiney about living in Midwest and it turns out the one place that could save my life was 20 mins away!! Boy did God shut me up!! Please call (618-567-3247) if you would like to talk or need anythingLots of prayers and HOPE-Cathy

Re: New member -- Wife recently diagnosed with ICC

Dear Jason, just a note to tell you that you are doing a FANTASTIC job. Please do not question yourself, we all do the best we can and nothing is to be gained by wondering or looking back. This is a rare and scary monster and I found that your gut will not steer you wrong. Listen to your gut, it is usually right. Your idea to divide and conquer is the best. Andrea should not be using her energy on those things anyway and I feel an Advocate may see things through clearer eyes. There is no such thing as a bad call with CC, it has it's own mind and everyone responds differently to all things CC. You have been doing the best thing by reading and learning as much as you can as knowledge is our biggest tool to fight with. BTW, I see nothing in your Posts that make me feel you are in denial as mentioned in your 1st Post. I see love and good intentions. Please keep us posted as we truly care.

Re: New member -- Wife recently diagnosed with ICC

Quick update:

Well the CT scan was with contrast. I have contacted Dr. Kato's office. They now have all of Andrea's information including the CT and PET scan disks. They said it might take a week or two, but Dr. Kato would review the files. I sure hope that Dr. Kato sees some potenital in her case.

Re: New member -- Wife recently diagnosed with ICC

Hi Jason,

Glad to hear that Dr Kato now has all of Andrea's info, scans etc and my fingers are crossed for some good news here for you both. Dr Kato has much experience with CC patients and has treated some our members. Stay strong and please keep us updated on everything, and remember that we are here for you.

My best wishes to you and Andrea,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member -- Wife recently diagnosed with ICC

Jason, you're a great husband and approaching this with logical and sound steps. My sister (50) has ICC and a young child (9) but won't consider opinions outside if as tangoed docs simply because its too stressful for her to second guess her docs decisions and feels it may delay current tx. She chooses to focus on other things in order to stay positive. While her husband is supportive, he is not a scientifically minded person and seems to use the distraction method of coping as well. plus he is very busy running his business, taking care of their son and going to ally sisters appointments (45 min from home). seems like Im the one delving deeply into all aspects if this disease every day, searching for answers and ideas and what to expect. especially interested in the various treatments to control the CC. Docs have good reasons to do certain tx on some and not on others...a lot depends on location of tumors, health of pt, behavior of that particular mutation of CC etc. For example, they think my sisters cancer is a combination of CC and hepatocellular carcinoma. Also, the cancer can mutate so may respond to a particular chemo in one part of body but not another. For some, CC is very slow growing snd others seem to have an aggressive form. So much research still needs to be done! No longer do I expect her to be "cured"; simply my wish is to control the CC and for my sister to have as many quality years with us as possible. She was diag in late July of last year and was never a resection candidate. Gem Cis Chemo, y90 radioembolization of liver tumors and now Xeloda chemo again. Went from stage III to Stage IV in that time, few symptoms aside from fatigue that isn't bad. Had trouble w low platelets while on Gem Cis. Anyway, the way you're approaching this is same way I would...and it's great to let your wife focus on the treatment and simply enjoying family life. I Will definitely add you and your wife to my thoughts and prayers for success in reaching the goal of shrinkage, a resection and remission. Stay strong and know you are not alone.Willow

Re: New member -- Wife recently diagnosed with ICC

y-90 was always in the mix, although in retrospect I may be the rare person who has a bad bone marrow reaction which has been difficult. Every case is completely different, but yes, resection without intent to "cure" is out there. Definitley lowers the tumor burden. I'm back to little guys in the right lobe, little tumors I wouldn't have even thought about before.

Re: New member -- Wife recently diagnosed with ICC

Quick update

Dr. Kato regarding resection:Dr. Kato reviewed Andrea's images and reports, but was unwilling to resect. The main issue was the number of sattelite leasions. He didn't think he could remove all the cancer and leave a viable liver behind. He also thought it would not be helpful to the prognosis to have surgery, but leave behind a number of cancer cells.

Dr. Chapman regarding a transplant:Dr. Chapman actually reviewed Andrea for resection and transplant. Andrea however is not a candidate for either. Similar concerns as Dr. Kato for the resection. For the transplant, I found out the Dr. Chapman is following the Mayo protocol. As such, he does not consider a transplant for ICC. I asked his assistant if they had ever done an ICC transplant. Her answer was "We have never knowingly done an ICC transplant, however, we have done some transplants that we found out was ICC after the transplant occured."

For now Andrea is getting Gem/Cis and is reponding well (shrinkage the last two scans!) We are still hoping surgery becomes an option at some point in the future.

Re: New member -- Wife recently diagnosed with ICC

Hello, Jason. I am wondering how your wife is doing since you haven't posted for a while. My husband, Ron, was diagnosed with ICC just 6 weeks ago. Your situation sounds very similar to ours. I do the research and Ron (age 59) works on healing. I know exactly how you feel about making the right decision - it's hard for me too. So far, Ron has had 2 Gem/Cis treatments and is on the same regimen - 2 weeks on, 1 week off. After the 1st treatment, there was noticeable shrinkage and the ONC was impressed. Ron has been told all the same things as you guys - no resection, no transplant, etc. Both lobes are involved with one large lesion measuring 10+cm. We too are hoping for enough shrinkage so that a re-section is possible. Godspeed!

Re: New member -- Wife recently diagnosed with ICC

Hi Snowbird,

A lot has happened since that last update. True to form, it has been a rollercoaster. The news is mostly very good, and for that I am thankful.

Since being diagnosed, Andrea has been doing Gem/Cis cycles. She just finished her 8th 3-week cycle. So for us, the rollercoaster has not been in the realm of treatment, but rather in the changing view of what might be next, and how it might all unfold.

Andrea has had two follow-up CT scans (one after 3 cycles, and one after 6 cycles). Both scans showed substantial shrinkage. After the second scan, we decided to cast a wider net and get formal 3rd/4th/5th opinions from the big cancer centers in the area / country.

UCLAWe first got a consult with Dr. Finn from UCLA. I had identified UCLA early on in the process as one of a few institutions with a transplant program that included ICC. The tumor board at UCLA had actually informally reviewed Andrea's case after each of her three scans. The news was negative after each scan -- Andrea was not currently a transplant candidate. The purpose of the meeting with Dr. Finn was to better understand the rationale.

Based on the discussion with Dr. Finn, UCLA does do ICC transplants, but no one is a transplant candidate initially. He explained their philosophy as cholangio is either "good biology" or "bad biology." If you had good biology, a transplant was a possibility. "Good biology" wasn't a biopsy test, but rather was defined as stable / chemo sensitive cancer for 12-18 months. Essentially, if you have longer term control of the cancer they will consider a transplant.

This actually sounded pretty good since early indications are that Andrea's cancer seems to be "good." However, Dr. Finn was not bullish in Andrea's case. The team at UCLA had noticed that lymph nodes near the liver had shrunk across scans. Lymph node involvement was a deal killer, and their best guess was that lymph nodes were involved. The bar would be very high to convince them that the lymph nodes were not involved (a negative biopsy would be helpful but not necessarily conclusive).

UCSFWe next had a consult with Dr. Kelley at UCSF. The reason for this consult was to get their thoughts on the short/intermediate term treatment plan. Andrea's blood counts are drifting down, and we might need to take a chemo break and/or change treatments for a while, so we wanted to get more thoughts on what would be the right next steps.

Given our UCLA experience, we were definitely interested in their thoughts on lymph node involvement. Initially, they had an indeterminant view. The lymph nodes did show slight shrinkage, but they might have been swollen as an immune response rather than cancerous. However, after their team review, they also came back with a view that the lymph nodes were likely involved...bummer.

RadioembolizationUp to this point, the general plan had been to do Gem/Cis until it "stopped working" (could never pin down if this meant stable or shrinking) or until the side effects were intolerable. After that, the treatment recommendation was radioembolization. I had done some research on radioembolization, and had some concerns about the whole-liver procedure suggested by Stanford (see other posts for more info). Since UCSF does radioembolization also, we decided to get a second opinion from them.

We learned a lot about the procedure, and found out that UCSF recommends a sequential lobe instead of a whole liver treatment (like most everyone else). We would probably have the procedure done at UCSF, except...Andrea is "not currently a good candidate!" Here we got really good news. According to both interventional radiologists (at Stanford and UCSF), Andrea's scans indicate too little viable cancer to warrant RE. In fact, the UCSF doc said "all I see in the scan is dead cancer"

With RE, you need blood-hungry cancer active in the liver to make the process work, otherwise you are just uniformly irradiating the liver (instead of selectively irradiating tumor).

So that is pretty much the current state of things. We are feeling great that Andrea's cancer seems very sensitive to chemo. We are shocked that only "dead cancer" is visible. At the same time, we are bummed that the prospects of a curative transplant seem to have faded.

Andrea's next scan is in the middle of October. MD Andersen (Dr. Javle) is doing the scan and will be reviewing the case. Hopefully the chemo will stay effective and a promising long-term strategy will appear...

Re: New member -- Wife recently diagnosed with ICC

Wow, Jason you and Andrea have quite a story and it is so informative and I think helpful for others as well. You are some great advocate and Andrea must be a wonderfully strong lady. You not only made what you have been going through very understandable, I think you are helping others with your journey. I agree dead Cancer is the best kind! If this keeps up you never know what one of the ONC's may suggest. I am in awe of the 2 of you. Sending you the best ever and so much good luck to you!

Re: New member -- Wife recently diagnosed with ICC

Jason,I know you think no transplant is bad news... But think of the GOOd news! Shrinkage... Only visible cancer cells are dead cells... That scores very, very high in my book!Yes, I understand the frustration of not being operable... I wasn't, then I was, then I wasn't. That was harder than the first "wasn't" because I had been given hope. But ask Lainy, en11, cawler, mcwgoat... Etc. and they will tell you I look healthy. Not operable, but not sick. Most of the cancer cells in my body are dead, too. I will take that every day over active cells!Keep on being a great advocate and you will find an outcome you both can LIVE with.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New member -- Wife recently diagnosed with ICC

Jason.... thank you so much for all the detailed information. It sounds like Andrea has been given the best news ever. From all that I've read elsewhere, if you can get by without a re-section or transplant, you are better off. It almost seems like after surgery, cancer spreads to other areas more often than without surgery, not to mention all the risks involved with surgery and recovery. You two have definitely done everything possible with all the opinions you've received. It is so encouraging to hear your story. Again, thanks for taking the time to share.

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